Kaitlyn Kahuila

When Delaney was born and her newborn screening showed an abnormality, I didn't know what to think. It was all a blur. I immediately went and got genetic testing done and found out that I was a carrier for Cystic Fibrosis. After further testing, we learned that not only was Delaney a carrier for CF - she also had a rare CFTR mutation, so rare, that there isn't even anything posted about it in medical journals. Under the advisement of a pulmonologist, we continued to get Delaney checked every six months since we weren't sure if her CFTR variant is CF-causing or not. Sometimes the check-ups included sweat tests, sometimes blood work, sometimes chest x-rays. On December 9th, 2021 - her latest chest x-ray showed progression of the fluid/mucous around her lungs. It was recommended that we start treating her for CF. I walked out of the doctor's office completely caught off guard. I expected to be told to come back in six months. I expected to be told that nothing looks too alarming but just to continue monitoring her. What really happened was the beginning of a long, trying, mentally and emotionally draining fight. I learned a long time ago not to question the "why's" in life. I dove in. I did my research, and I found that over the years there have been a tremendous amount of groundbreaking milestones for people with CF. But the one thing that I keep coming back too, is that there is no cure.

That is why we're walking.

The CF community has come so far, but there is still work to be done.

Please support me! 

With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!